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Following long term survivors - why don't they?

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I am a 23 year long term survivor of NHL and like another poster on this site I too have had problems with being followed by oncology long after treatments. That old idea that after 5 years you are home free alot of us can attest isn't the case as far as side effects go and for me they have kept me down ever since initial treatments.

I would think that alot could be learned from us as long term survivors and for our own personal good I would have thought this would be a given but guess not.

Any thoughts on this or personal experiences or both?

Blessings,

Bluerose

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

I turns out that much research is now being devoted to the effects of treatment on long-term survivors. The problem, if there is one, is that any research started recently, particularly as related to long-term survivors, will take years to yield results, most likely.

You can begin to study a 32-year old survivor's issues today, for example, but you will not have reliable results for years. You, blue, might decide that four years is enough. The researchers might decide that they need 10 years, or 20 years, even 30.

But there IS much study in this direction happening now in institutions across the country and probably around the civilized world.

Check out the latest issue of Cure magazine (I believe it is curetoday.com online) where they discuss how it appears that a number of heart-related problems later in life (among others) seem to stem directly from radiation and/or chemo.

They are working it.

Hope this helps.

Joe

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Yup, it takes time. They are learning from long term survivors though because some of the treatments I had years ago they don't even do anymore. For instance total body rads, and if they do do it today - it's not as often as before, that's for sure. Too much damage.

Bone marrow/stem cell trnnsplants when I was treated involved a 2 month stay in isolation, today I hear some are day treatments. YIKES. Yup, they are learning. I just really feel that more studies should be done on us long term survivors but I think the message is getting out anywho through our GP's who get to deal with all of our symptoms on a regular basis. We are showing up in big numbers now so they are taking more notice.

Thanks for your input Joester.

Blessings,

Bluerose

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

This is a fascinating subject to be chatting about today. I'm NED for 1-1/2 yrs and had chemo and 33 rounds of pelvic external radiation. I've approached both my docs about my lower back pain and the one tells me with a smile, "at least you don't have cancer". One suggests to see my PCP and other to start on pain meds and give it another year. Push it off onto some other doc, but you know what, which doc do they suggest we go to and actually get guidance???? Our healthcare system is such that I could probably hit 4 different docs and still have the pain in my back and going down my one leg....gee! So what's a person to do?

Met a nice oncology RN at my last chiropractor appt and she told me about her latest training sessions. They are just now informing them about all the long-term affects cancer patients are going to see from our treatments. Mentioned side affects will be cumulative and can last 20-30 yrs and beyond. Wow...such a shock as haven't we been addressing these for lots of prior years?

So here I am NED, but having some more pain. Now I've convinced myself to keep trying different exercises, yoga stretches, etc, and with the Spring weather right around the corner, I might kick this in the butt on my own. On other side, my deductible is so high that any doc I go to now will be out of my pocket....so give the old I can try it on my own attitude. Then...if all else fails, try some doc. My thoughts---- what doc???? There's a laundry list of different type of docs...how confusing.

Don't get me wrong, I'm not complaining, just some days we hit the wall and want our OLD LIFE BACK. Since I can't have it back, I'll deal with my NEW NORMAL LIFE!!!

Thanks for listening to my rant....
Jan

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I have many of your issues with long term effects. I think I mentioed earlier I am a 23 year cancer survivor of non hodgkins lymphoma but doesn't matter what types we have, many of us have similar issues from certain treatments.

There is a price to pay for longevity with many treatments for sure. One thing you said makes me so angry - not what you said but what the retort is from doctors. You mentioned that they said 'at least you don't have cancer' after you told them about your side effects. So what - you are supposed to feel guilty for complaining? I HATE THAT RESPONSE. Of course we are glad we lived and haven't had a recurrance but our side effects issues are valid and need addressing.

I remember when I started to mention my side effects to my transplant surgeon years ago. He listened and then asked me if I had a shrink. I got so mad, broke out in tears and called him something non Christian, lol, and walked out. It was clear to me then it wasn't in my head and if you think you are invalidated now, you should have seen treatment 23 years ago. Almost no support. Not blaming anyone, they didn't know, but still it was hard on the patients I cant tell you - they thought it was all in our head.

Nowadays many of us have survived and they have heard the same symptoms from us over and over and realized, oh oh here come a whole new group of patients - long term survivors and we cured them now what? I feel like an alien body because they just weren't sure what to do with us, we were so altered. Now of course the trend seems to be to minimize treatment sites using localized chemo and rads and the least possible, heck when I was treated having a CT scan was looked at as totally benign, now they realize there is more radiation coming from them than once thought. Do you know how many CTs I have had in 23 years? Don't ask.

So what I am saying is that the medical profession is learning but in the process all who have been treated years back and even now deal with sometimes, eventually, after effects that can last many years. Fatigue is a big one too.

Are you aware of Late Effects clinics in the U.S.? Many deal with late effects for those who were treated as children and have grown up with effects from treatments but there is one I know of, maybe more now, that deals with late effects from treatments for those treated as adults. It's called the Perini (sp) clinic at The Lance Armstrong Clinic at Dana Farber in Boston. If you are interested call them and ask to speak to a nurse practioner or information officer who might be able to guide you with research on your particular possible late effects from cancer treatments. They were quite helpful to me when I asked for info.

I live in Canada and we have no late effects clinics yet, all is handled through oncology but it's still a young field. Validation for cancer survivors is key in their healing I believe and knowing that doctors are up on the latest in side effects for survivors is very important.

I feel your pain when trying to get definite answers on side effects. Unfortunatley wer are often told that the medical issue we are dealing with can also be caused by aging etc. like arthritis but it's also common for thosr radiated to undergo alot of early arthritis. Heck that was one of the only side effects I remember them telling me about 20 years ago, they knew that back then, that it was possible. It happened to me, low back arthritis that has me using a wheelchair sometimes but even now they won't say that was the DEFINITE CAUSE of my arthritis, could be other things too. Hello? lol. I know it's possible but looking at my history, highly unlikely it's anything other than the rads I received that did this with the arthritis.

Don't get me started on high deductibles too. lol. I go back and forth wanting to cancel my health plan because it's getting so high I don't know if I can afford it anymore. But if I do then I will never get another health plan again because of pre-existing conditions. I really think that there should be some compensation in lower plan costs for those cancer survivors who were treated years back or for that matter treated ever and experiencing after effects. Many cancer drugs and rad protocols are harsh and of course they damage the body so of course we can expect side effects but geez how the heck can you afford them as they accummulate after awhile? Oh I know the canundrum some survivors find themselves in alright with all of this. I sure do.

Oh by the way YOU CAN COMPLAIN, don't feel bad about that, it's rough and it's not complaining it's airing your emotions that free you and help you heal. This site understands discussing side effects, you can feel validated here.

Wish I had some easy ways out of all of this for you, and me. Keep posting, keep being honest and keep fighting.

All the best,

Bluerose

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

You're loaded with such great information....love reading your postings.

Late Effects Clinics, yes I've heard of them and when I research it seems to be center more on children cancers to adult...which you mentioned. Also Perini Clinics with Lance Armstrong is another option. Just nice to speak with someone who can help when we're at the part on our cancer journey -- NED for a while. I'm not away from my treatments as long as you, but still have lots of issues with the "how to get back to life". Really, how to get back to my NEW NORMAL LIFE??????

There's a lot of issues with my lower back and leg pain that started with my chiro and oncol suggesting arthritis. Yep as my oncol suggested, you're getting older and possibly arthritis. I can see their point of view, throw me to my next doc as they've done their work. So...here I sit wondering what doc and how much more I'll be spending until I get some help on the pain.

Sure can see where you've had and seen a lot of changes in treatments from when you were first diagnosed many years ago. See where radiation is so much more centralized and not hitting lots of other body parts which give them side affects as well. Sad isn't it.

I can tell you I know my body and want to be in control, so I do research enough out there to know what leg I should be standing on when I'm chatting with my doctor. I've convinced my oncol to not do CT scan every 3 or 4 months during my followup appts, but go with my tumor marker. Tumor marker for my cancer is called CA125 (uterine cancer), and it does work for me, whereas, some uterine patients it won't work. Now he knows the strong radiation from the scans and working with me here...thankfully! But...I approched him about my thoughts and he was in agreement. If he didn't agree, he'd not go with my thoughts to go forward.

I figure the control I gain is by eating properly, watching the environmental toxins, getting exercise and reducing my stress level. I'm trying so hard as don't want that devil back on my side ever again.

This week is my 4-month checkup with my oncol so I'm feeling the "scanxiety". But...in another 5 days life will be back to normal (new normal) once more. Crazy how cancer still knocks its head to remind us to be thinking about it...boohoo!

Thanks again for your comforting words and yes I do try to be honest but don't want to be a negative person...not my way of going thru life!!

Jan

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Negativity doesn't get anyone anywhere except further down but it is important to be able to express your down times when you have them and this board allows that and all understand here and that's important I feel. No one should feel bad about having down times, it's natural in all of this.

Ya the Perini clinic deals with adult cancer patients diagnosed as adults, one of the few clinics that deal with an adult population of cancer patients. As time goes on and there is a whole new population of cancer survivors who were treated as adults and have survived, lots of us now even, you will probably see more clinics like that. Of course the late effects clinics that are for adults treated as children in past years has alot of different side effects as the survivors were still growing when they were hit with treatments. They are very helpful at both the Lance ARmstrong and Perini clinics as I said before.

Glad to hear you are taking control of your health and sounds like you have doctors who are very open to listening and really hearing what you have experienced. Very important as you well know.

Take good care.

Blessings,

Bluerose

Nana b's picture
Nana b
Posts: 3015
Joined: May 2009

I don't know why Supreme Greens help me with all the aches and pains but they do!! I currently use the Trader Joe's brand. Ned. 18 months

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I don't know if I mentioned this before but for me I suspected fibromyalgia because of all the nerve pain (I thought it was nerve pain and still do). They hemmed and hawed and stayed on the fence about the diagnosis and then finally only 3 years ago after dealing with the tingling and cold and numbness of my feet esp. finally a rheumatologist diagnosed me with fibromyalgia. DUH. If you haven't been checked for that ask for a fibromyalgia test. Also you can find out for sure about nerve damage with a nerve conduction test. I am chicken to have that one because I have a pacemaker from chemo damage and am worried the test will interfere with it. My cardiologist said there is a low likelyhood but I am always in the 'low likelyhood' group since transplant.

Anywho just thought I would throw some ideas at you for you to think about. Hopefully you didn't have the kind of treatments that would produce these kinds of side effects.
I have chemobrain big time so I hope I am not repeating myself here or forget some of what you told me. Just disregard stuff that isn't pertinant. lol.

Take care.

Bluerose

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

You're just full of all kinds of goodies...keep 'em coming my way!

I don't think it's fibromyalgia as don't have much with nerve issues, just the lower back. In fact, since I've been ranting about this the back has improved...heck why is any ones guess.

Since saw the oncologist last week for my 4-month (did post to you on another area -- all is still NED..yeah) he set me up for my 2-yr bone scan next month. The first one ever was prior to start of chemo March '09 and showed bone thinning at top of hip. Should show something.

Also I've read the blood supply to various area is diminished after treatments and remember I had external radiation to my pelvic area (uterine cancer). So this area got fried big time and could be part of my issues.

I'm calling the Perini Clinic soon as worth a shot to see what direction they feel will be best.

Chemo brain you too? Heck mine has gotten worse and now getting used to just writing everything down. Now have to remember where I put my notes...dah!

You take care and so nice to read your postings...you're a valuable member here....
Jan

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Yup I'm full of it alright. lol. Well I guess you can't help but gather alot of information after 23 years of dealing with all of this. However the way the chemobrain is going I might not remember much of it soon, hate chemobrain.

I don't get reminders that there have been answers to some of my posts on this site, anymore, not sure why, so it's easy to lose track of where I posted which is kind of a pain. Oh well I find them sooner or later.

Sorry to hear you keep having issues with your health. Hopefully The Perini Clinic can help answer some questions or validate you at least and maybe they can point you to something closer to you where they deal with late effects more.

Keep me posted.

Blessings,

Bluerose

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I hope you get some answers. I live in Canada and going to the Perini clinic is out for me, too expensive although they do give us Canucks a discount, still I have just too many health issues and would need to see too many specialists for my little bank account so I guess it's symptom by symptom for me.

I am writing you back because I had such a frustrating situation yesterday I just about screamed. I forget what all I wrote you on but one thing that has been a huge issue for me is that I can't have mammograms. The chemobrain might be kicking in here so forgive me if I talked aobut this before. I haven't had a mammogram since just before my treatments started about 23 years ago, a baseline. Since then I have been too sensitive to have another one. I had my doctor do examination of my breasts every 6 months but then about 12 years ago started to ask about ultrasounds instead. So my GP obliged knowing me and how body attentive I had become, not body paranoid, body attentive. lol. Anywho 12 years ago no problem.

So flash forward to now when the health care system is creaking up here (free has it's problems) and I had to literally go to another city where we have out biggest cancer hospital in Canada, Toronto, and get someone there to call to our Breast Screening here where I live not far from Toronto and finally they agreed to let me have an ultrasound. WHAT THE HECK? I know it's about nerve damage and before treatments I had no problem wiht mammograms and now just putting that plate down on me for a second my eyes bug out and roll across the floor in pain, no way.

So I had my last ultrasound after all this hastle about 2 weeks ago and the technician gives me a lecture on how I should really have a mammogram IT'S MUCH MORE EFFICIENT. Son of a - - - - -. I KNOW THAT, I CAN'T HAVE ONE. HELLLLOOOOOOOOO. She just didn't get it. I told her that I am not one of those ultra sensitive types that would just rather not go through it, I FREAKIN CAN'T. Still, nothing, she glazed over. Anywho they found a lymph node in my left breast and said it looks like nothing but usually lymph nodes don't hang out in breasts, just under the arms but it's not totally out of the question, they do see this sometimes. She said, but it's nothing to worry about.

So yesterday I get this call from my GP's nurse and she starts in on this lymph node and that the suggestion, because of all my radiation and treatments in the past is, WAIT FOR IT, YUP, HAVE A MAMMOGRAM. OH FOR THE LOVE OF GAWD. I told the nurse 'oh brother, this would just be funny if it wasn't me who this is all about'. I CAN'T HAVE ONE. Still nadda.

I am complicated, as many survivors are who had my kind of treatment and survived this long, collateral damage big time. I had heart damage from a chemo drug, adriamycin, so had to have a pacemaker put in in 2005, nearly died from that arythmia before they got it implanted, so I can't have an MRI because of the metal in the pacemaker. My options for investigation are limited. I might go and see my gyne/onc in a couple of months about this and maybe he can rip that lymph node out and biopsy, to heck with the investigation, if they are worried - take it out and look at it.

The frustration levels that we deal with with side effects of treatments can be hellish, I don't have to tell you that. I have low back pain from hell too as I said and they blame it on arthritis and I'm sure some of it is but I don't htink it's all arthritis. Too many of us survivors have that pain and not all can have arthritis. Believe in your instincts. Over the years many doctors have looked at me like I was crazy with my theories on this and that and in time they have all come true without exception, we know our bodies best. I know, I sound like a broken record.

I think I am going to call my gyne/onc's office today and talk to his nurse who is very helpful. I had to cancel the results appt from my pelvic ultrasound the other day as I am moving and am overwhelmed with details but might have to sneak this one appointment in.

Keep me posted on how you are doing. Just thought I would share this issue I am involved in with you, I know you can relate.

All the best,

Bluerose

Barb56
Posts: 20
Joined: Apr 2011

Jazzy, I suggest seeing a doc who specializes in pain. My hips were killing me after radiation for colon cancer. (I walked like an old lady after any period of inactivity). My oncologist referred me to the radiologist who had diagnosed me, as he also specialized in pain management.(he said he did both because he still wanted to see patients, not just stare at X-rays all day). Long story short, he gave me injections in my hips - ONE TIME- and that took care of it. It was like a bursitis thing, whatever it was, it worked. They injected three drugs and that did it. He said it could have taken more, but in my case once was enough. My wonderful doc said keep after these things, there is almost always something they can do for you, He called it better living thru chemistry...lol.

TJ74's picture
TJ74
Posts: 18
Joined: Aug 2011

I'm a 20 year survivor from a bmt. I have never been the same. A few years after my transplant, the pain in my back got so bad I couldn't walk. I was put on pain meds all the way up to methadone which I had no clue about, but isn't good for the bone marrow. My gp at the time eventually got frustrated with me because he didn't know what to do with my pain and dropped me. I went for years with no doc and started treating my own pain. I was in a smaller town and eventually got pawned off to the psychiatrists because no one new what to do with me. I eventually found a sleep specialist who has been awesome for me and had apologized on behalf of all the doctors that messed up with me acknowledging that the medical system messed up with me. I have also finally found a doc to manage the pain I'm in. He gives me slow release morph which helps me function somewhat. I was referred to the cancer agency in my town for "counseling" a few years ago, but she had never met someone who had lived as long as I had from a bmt and had to do research before our sessions. She told me that there was no research for people who have live passed five years. Before I met the doc I have now and my sleep specialist, my psychiatrist didn't believe I have depression but couldn't figure out, the physc ward wouldn't admit me when I felt like killing myself because they know I was in physical pain, not mental... Ya maybe now the treatments are better as I was in isolation for almost 2 months as well, but they kept us here. Was the their only job to keep us living with no proper aftercare? Sorry I'm venting but I have had no one understand and I went into isolation for along time. Is this a little harsh, or do you guys get this at all?

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I have alot of the same issues you have as far as side effects of treatments are concerned. I am sure that I signed all kinds of forms before my treatments for side effects but back then it was a choice of whether I wanted treatment or not, as it is with most of us and really if you think about it - would you have turned down treatment if you knew the side effects ahead of time? You could live longer with treatment but later you will have these side effects? I know I would have said - go for it.

I can't be sure if they even knew what the long term side effects would be because I am of the conclusion that they didn't think we would live this long. lol. I think that the treatments have allowed us to survive way longer than was expected so this is a new frontier for medicine. We are trailblazers really, like the adult survivors of chldhood cancers were to us, there are late effects clinics for them (has been for years) but only one for adults treated as adults which is the Perini Clinic at Dana Farber. Maybe they did know what was down the road but felt life was more important - who knows.

The frustration for me and you and others in our position is that no one really knows how all of this is affecting us so far down the road so we seldom get answers to our medical issues and sometimes we don't present to our doctors in the same ways that people who havent been treated like we have do. I mean that our bodies don't show symptoms in a similar way other do at times. We know our bodies best and you have to keep pushing for care and stand your ground. Eventually you will find a doctor who believes in you.

What province are you in? I am in Ontario and Princess Margaret Hospital is the most up to date of our hospitals. It's a cancer hospital. I had my radiation protocol concocted there but I was treated in Ottawa. You had total body rads too didn't you? I would be interested in hearing how they set you up for that if you could explain that to me. My positioning was interesting to say the least. They try not to radiate too much of the body these days, total body rads seems out of the picture if at all possible. Too much damage, ta da.

We are very complicated patients, long term survivors. Docs have to treat as symptoms come up because they have no idea where we are heading medically as this is all pretty new to them. Little consulation to us eh? Survivorship is becoming a big issue as more and more of us survive longer and so you will hear more and more about this.

You mentioned that there have been no studies done for all of this and that's not the case. Alot has been done and there is a multitude of information online about it all. Groups have sprung up who have done their own research too and sites like this where we can all chat about our own experiences serves to enlighten us to realize that this is happening to others too and so we don't feel as alone and almost crazy thinking it's just us and we have lost our minds. Not true.

There is a group online called ACOR, google them and look through the site. You will be stunned at how much research they have done and how much they have accomplished in getting the word out about issues with cancer survivorship.

I have a couple of concers though about your situation. First of all your mentioning of suicide is something I am concerned about. Depression is common for many cancer patients and survivors and you have to get on top of that, it's fixable, where many of our issues may not be. So please go to your doc, any doc, and get yourself on track there first off. I know you said you have a better doc now but is you depression under control? Maybe I missed somewhere where you said that that was done now.

Can you type up a list of your medical issues as you know them? Not necessarily those already diagnosed just list from head to toe what kind of pains and issues you deal with. It will be interesting to see how many I and others can tick off too.

Talk to you soon.

Blessings,

Bluerose

TJ74's picture
TJ74
Posts: 18
Joined: Aug 2011

Let me first say, I'm not suicidal anymore. Maybe where you live there has be lots of research but I lived in a smaller town and just recently moved back to the Vancouver area. But the last 12 years I spent in the interior of BC where I was a one of a kind patient. Not having any support and trying to explain my symptoms to doctors that just frustrated them eventually drove me to want to kill myself. I have deal with that issue but the loneliness will always be an issue. In my town where I was sent for counseling, this is what the cancer counselor told me, that there was no research for someone who had survived a bmt past five years. She did research and found some stuff out about long-term side effects and said it looked like all of it was normal. This was a couple of years ago and was the first acknowledgement of what I was experiencing was true but that just eased my heart a little and did nothing for the symptoms. You may have signed some papers before you went through what you did, but I was only 16 and this was all new to my family and they just went along with what they said for me to do. Would I do it again? Not a chance! For you to understand this you would have to here my whole story and that would take forever as I have just started writing about it. I have a few different letters, one is 18 typed pages. Can I do it over again? No I can't, so that point is mute. I have chosen to keep living even though it's hard and no one gets it. I know everyone's experience is different and some people live and some die as two of my friends died and I have never met someone who has lived through a transplant. It's a long complicated story that involves way more than cancer, in why I came out wanting to die. There are so many factors that play into it, it would be impossible for anyone to get it, and I get that and have come to acceptance of it. I have isolated myself mostly and am just starting to reach out after 20 years. I am afraid that I will be judged and not accepted even by my peers in the cancer journey because of my feelings of wishing I hadn't made it. Is this a place of total acceptance, understanding and empathy or will I be thought less of because of my experiences, some very negative? I don't sit around feeling sorry for myself at all, I just want a place to be real. I fight with vigorous tenacity and don't give up. It's just in a life that unfortunately, most people can't understand. I'll list my health issues in another posting.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

You have obviously lived with invaliation of your conditionn and issues too long because even though I told you that many of your issues are common among long term survivors I don't think it has sunk in as you have heard information that is just wrong for too long.
I have survived a bone marrow transplant and I am not the only one out there, there are many others.

I think your isolation is one of the bigger issues right now that is holding you back. You mentioned that you have moved back to the Vancouver area, I used to live in Vancouver for years. I was told that they have some great support groups through the Cancer Agency there, have you called and talked with them about that? I am thinking that if you can find a good group of survivors and a good program you will soon realize that you are not alone and your healing can then truly start. I had a great doctor in Toronto who moved to Vancouver to head up the BC Cancer Agency but unfortunately he has just retired although I'm sure he still pops in now and again to keep his hand in it all, he was very devoted.

No matter how rotten you feel you need to push yourself to call one of these groups and force yourself to go and see for yourself, face to face, that healing from all of this is possible and you can survive all the side effects and issues we had no idea were going to happen to us but have.

Keep writing and I will talk to you soon.

Blessings,

Bluerose

patty7
Posts: 3
Joined: Jan 2012

You have very powerful words girl. I used to be so out going and I find myself isolating more and more. It's very nice to run back into you. I used to be curecancer and in chat we would have some good laughs here and there. It was a long time ago. Hope to catch ya soon around here. I just got a new computer that I am trying to figure out.

Take Care of you Bluerose.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Hondo's picture
Hondo
Posts: 5881
Joined: Apr 2009

You are so correct on calling it guinny pigs treatment; I have been radiated twice to my head for NPC cancer. A few years ago I was having some very bad pains in my head and went to see my local oncal man about it. He made me do an MRI and told me I had another tumor growing in my head and it was resting on my brain, I needed to get on Chemo again and fast. My wife did not believe it so she said No lets go to MD Anderson for a second opinion. They did a PET and MRI and could not find any Cancer in my body, I sent the report to my local oncal man to read. He said one of my problems are that they had never had someone live passed the 5 years mark who took rad and chemo twice to the head for NPC like I did, and he did not expect me to live passed 3 years. I don’t go to him anymore as I feel I can’t trust him, just don’t understand why he would tell me I had another tumor growing when I did not. Maybe he wanted to get rid of me with more chemo this time to keep the records straight. It does make you wonders sometimes when we beat the odds what out doctors think…

Thanks
Hondo

irishangel32
Posts: 4
Joined: Sep 2011

Now that molecular lab engineering,has enabled the relese of vaccines treating Cancer now released by FDA last week. The focus is there.
I admire the AIDS community for their endless resources.Under the Ryan White Act.
With the Economy,case management is unattainable on my 9k a year check. I am frustrated beyound belief. I was gaureenteed lifetime care in 1979 then in 1997 before the BMT, I had to agree to opt out for the 500k BMT.
My pain management id daypro 600mg,and Cymbalta 60mg.
Dr. do not admit their mistakes they bury them,sillies...lol

swerdnab
Posts: 1
Joined: Sep 2012

I celebrated my 50th year of being a cancer survivor last October on my 60th birthday.
Quite honestly, I hear lots of talk from cancer organizations about long term survivors and late effects, but when I talk to an oncologist, what I hear is "what do you want me to do?" The oncologists I have met with don't seem to have any idea of what do to with someone like me. I was terminal at age 10 with a Wilm's tumor. I've had 3 metastatic cancers, 2 other primary cancers (caused by the radiation I had as a child) and lots of skin cancers.
Now I have skin which is breaking down and can't find anyone who has a clue of what to do.
I was give 3 suggestions by a surgeon:
1. Use a prescription ointment (called Regranex) which costs $1,800 for two tiny tubes of ointment. My insurance covered most and I got home and read the sheet and it has nothing under side effects, but under warnings it says "increases risk of dying from cancer". I had already used it a couple of days and stopped thinking it was stupid to use it.
2. Hyperbaric chamber treatments - supposedly the results are good if you can find a place to do it, afford to pay for it, but the results reverse when you stop the treatments.
3. Plastic surgery like a tram flap to mend the skin breaking down, but surgeon said I may not have good enough blood supply for that.

Anyone know anything about this? Oh yes, and in the area where the skin is breaking down (around my sternum, on top of original incision for Wilms tumor) I have skin cancer and had to have tissue removed and stitched up to get clean margins...don't know yet if it will heal; at this time (10 days after tissue excised) it is infected and not healing.

Anyone know a clinic or doctor who is really knowledgeable about radiated skin??

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Eventhough our surviorship is such a blessing it doesn't come alone. Congratulations on your 50 years. What you have described since your original treatments sounds very similiar to fellow survivors that I know. I had radiation and chemo for Hodgkins Lymphoma in 1989 and 1994. Since then, I had a dbl masectomy for breast cancer caused from the radiation treatments. I have thyroid, cardiac and pulmonary problems from the cancer treatments. No skin cancers yet but it is very common LT effect. I see my onclogist and radiation oncologist for 6 month followups but frankly, they have to be concerned on being up to date on treating their current patients fighting cancer. So 3 years ago, I found a website, ACOR, and a Adult Long Term Followup doctor at Memorial Sloan Kettering Cancer Center in NYC. Where are you located? There are many specialized clinics around the US seeing patients like us. My MSKCC doctor would know who specializes in anything that is a result of our treatments, such as your skin problem. I know when I had my masectomy they were unsure how or if my skin would heal. There was talk of hyperbaric treatments prior to surgery, but we proceeded and all healed nicely.
On the ACOR website there is a mailing list for Long Term Survivors. There are members like you that are Wilms Tumor survivors. On this mailing list you can search archives and see if someone else has had a similar problem or you can join and ask away. You are not alone, so many other survivors are here facing similar situations and are willing to point you in the right direction. If you want to explore ACOR and can't figure out how to join the LT Survivors maling List, let me know, I'll help.
All the best,
Cathy

patty7
Posts: 3
Joined: Jan 2012

Hey There Bluerose,

My name before was curecancer...been away for quite some time. I couldn't remember your name however, I was bouncing around and bam!!!

 

Sure hope you doing well

Someday I hope to see you in chat.

Hugs,

Patty

jeanlong1
Posts: 1
Joined: Mar 2013

hello everyone! 

i have been in remission since 2005 for my NHL and survived my kidney cancer in 2007 with the removal of my right kidney.

i have been beside myself wondering WHY i am not the same person that i was pre-chemotherepy. my bones, joints and muscles just ache extensively every day. i was diagnosed with AVN in my hips, but find that the pain is very intense. due to having only one kidney, they limit what and how much medication i can take.

i am so frustrated.... 

 

lyndy5649's picture
lyndy5649
Posts: 4
Joined: Dec 2013

Hi, I was lucky enough to be asked by my oncologist if I wanted to join such a group when I was diagnosed 11 yrs. ago, and I agreed in order to possibly help others in the future. Initially, every month I was given a questionaire sheet to fill out and discussed my emotions and general health with a counselor. Then it was every 3 months, then 6 and now every year. Baylor is now doing more studies on long term effects and have suggested certain cancers no longer need aggressive treatment that was used in the past, thanks mostly to those that were/are given the chance to be a part of the study groups.

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